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Mind the gaps

I seem to be spending so much of my time confused these days, lost as to what is happening and when. I knew, and I have even mentioned them several times, that I have both hospital appointments and on top of that someone from Social Services coming to see me, but as to when any of these things were, well, next week was all that was in my head. It appears next week is far sooner than I thought. When Adam phoned me at lunchtime yesterday, he told me that he had managed to change the appointment with Gastro to an earlier slot on the same day. I had been worrying that going there so late in the morning, would lead to another horror story. I was so pleased that that one was sorted out, as I was quite honestly stressing about it already, and it’s not until the 16th of June, then Adam said something that made the colour drain from my face.

This Wednesday morning I will be at the breast screening clinic. That particular appointment was originally supposed to have taken place back in January. Due to not even being able to book an ambulance for five different dates, it was finally shunted all the way to May. I don’t know why, but I didn’t think it was until next Monday, no, that wasn’t one of the possible dates, just one my brain managed to create all by itself, something it seems to be doing with ease recently. My confusion was all the greater as quite clearly, Monday would no longer be May, but my brain was quite happily just ignoring that fact.

Not surprisingly, the fact I had that one wrong, meant the visit from Social Services had also become muddled. When Adam told me the other day, clearly, I wasn’t really able at the time to take in all that he was saying. He asked me something about would the two being in the same week, be too much for me. What he didn’t realise was that I was confused, so when he asked, I thought they would be three days to recover between them, not just one, plus, I thought I had the whole of this week doing nothing, just relaxing as much as possible, so no problem. Now I am faced with a total nightmare. Today, the shopping arrives, Wednesday, out to the breast clinic, Thursday to rest and then the assessment on Friday. This is a hugely busy and stressful week for me and I wasn’t even aware of any of it.

Dates, times, and appointments, all things that seem to be becoming more and more muddled. It doesn’t matter how many times Adam tells me what is happening, or how many times I have written these things down, my brain is determined to make a total mess of them. It isn’t helped as Adam throws into the mix of chatter about other people, his family, what’s no TV and so on. What should be clear information, lands up in my mind as anything but. Then leave me alone with what he thinks is clear details, and slowly I turn it into anything but. We have come up with different ways of dealing with this in the past, but none of them work and none of them result in breaking my confusion. But that doesn’t mean that we have given up, I have come up with a new idea, one that is at least worth trying. Last night, I suggested to Adam, that every Sunday evening when we sit down together to watch TV, that the first thing we do, is to go over everything and anything that will be happening in the next 8 days. I want him to tell me about what he will be doing, if he has time off, or he’s doing something with his family. If we have hospital appointments or if anyone is going to be coming here. I am hoping that with it being clear defined information, that we discuss face to face, that I will be able to avoid the panic attacks, of being totally lost.

Unless you have lived with confusion, it is something that is difficult to explain. I used to be so good at dates and so on, I never in my life had the need of a calendar or even a diary. I remembered everything, birthdays, days out, you name it, I knew when it was due to happen, at home, outside of it or at work. Finding that you can’t do something as simple as remembering the date of a hospital appointment, is scary. It’s even scarier when you suddenly don’t even know how old you are and have to work it out from the year you were born. Yes, that has happened to me, and more than once. We don’t expect our minds to drop information that simple and that vital, so when you are searching wildly for the answers, the fear starts to grow and just makes it worse by the second. It feels as though someone has managed to get inside your head, and has plucked all that you need that second, out of its home and planted it somewhere else, it’s just you don’t where. You run from place to place, to place, getting more and more desperate by the second. Should it be a case of someone else, telling you, you have it wrong, the effect is even worse.

I had without any doubt in my mind, the next two weeks planned out, I knew where I was going to be, what I was going to be doing and I was safe. Suddenly, all that knowledge was ripped into tiny pieces and I was standing there desperately trying to catch each piece as it fluttered just out of reach. It was out of reach because I knew where it was meant to be, I had known for weeks, so how could this new information possibly fit into my life. Making it fit was like picking up a mallet and voluntarily hitting myself over the head with it and I had to do it, as I now trust Adams brain, far more than I do my own when it comes to this sort of information. Once you find your brain letting you down, even if it is within defined parameters, you start to mistrust it in others, but there is only so much double checking that you can do before you drive yourself insane.

Watching your brain fall apart isn’t that easy to live with. I tried for a long time to pretend it wasn’t happening, but it is, and I know I can’t pretend it’s not any longer. It’s a growing fact, and something I am becoming more and more aware of. Which in an odd way, I guess is good. If I wasn’t aware, well I would be in a far worse place than I am.

9 thoughts on “Mind the gaps”

I am so sorry you are in this place. My uncle is also suffering from issues with his brain and my aunt has been his sole caregiver. I can only offer a little solution. Get a dry erase white board that has one week printed on it. Use that calendar for you to have your weekly appointments on it. You can even use a small picture along with the words to help you remember. Much like someone learning a new language or a Kindergarten student learning to read (I am a K teacher, and this is a strategy I use daily), pictures help to convey meaning when your brain can’t hang onto so much language all at once. If you think about it, advertisers use the icon strategy all the time as it is an easy ‘hook’ for consumers to know and recognize their products and services. I am thinking of you.

We have over the years tried loads of aids for different memory problems, they always fail because I’m involved. I don’t know why, but if I inter act with it in any way, I seem to almost make it fail, but ticking things as done, or dealt with, without actually doing them. The tick it and I know I have to do it system, still thinks it works. We actually do have a calendar but the issue with that is, the same as I have with letters, I miss read it. Adam has to deal with all my mail as I will turn it into something it isn’t and get in a panic. That’s why we’re going to try the Sunday talk, that way he has verbalised it not just written it somewhere, where I will get it all wrong, but I can see how your system would work for many. 🙂

I agree. I used to pride myself on how great my memory was. It’s hard to let go of that and accept that my memory sucks and I get confused and forgetful with the smallest things. Just a week ago I forgot (again) hoe old I am when talking with some people. I didn’t even try to do the math from my year. I just said I’m somewhere around this age. I’ve forgotten to flush the toilet, turn off the oven, and one day I almost left my place with no pants on. I laughed at myself. Fortunately, the small breeze from walking towards the door made me take notice. It’s frustrating. I write down a lot now. And sometimes I take so many notes that it doesn’t mean anything. I’ll read a note weeks later and think that would have been good to take care of or that is a great idea. So now, if I think it’s important, I do whatever I think of in the moment. If I wait (even with writing it down) I’ll most likely forget. Thanks for the blog. Sometimes I feel like I’m going berserks. It’s a good reminder to know that I have company here. And I loved your last line about at least knowing…so true.

Sorry for the typo. *how* I never got a solid answer on why this is either. I had a brain scan several years ago because it was so bad. I was really scared I had a brain tumor or something. It came back negative and then I looked more into it and I think it’s another symptom of Fibro. I don’t remember for sure but whatever it’s related to with my conditions made me feel “better” that I wasn’t developing something new. It fit in line with what I already have. Anyways. Thanks again for the post.

Apart from the pants, I have done every single thing you have listed. I’m now banded from cooking, it was just getting too dangerous and too expensive. I love you for saying you too ignore the notes you write, I gave up on them for just that reason. Like you, it’s do it now or forget it even needed doing, usually the latter.

Oh I love your post it proves that being aware is great that you know you ve forgot. I replied a while back about a social worker visit to your blog a week or so ago, well,
we had our assessment from nhs and social services today passed so far but has to go to next level to managers above to be passed. With great respect to the social worker asking what I thought were silly questions she actually was a fab advocate. So we never know. I really hope you can manage all you have to do as as we know it is a lot. Anyway Pants! Take care. Sending a big (((hugs)))